Development and validation of a short version of the Stroke-Specific Quality of Life

Scale.

M.W.M. Post, PhD; H. Boosman, MSc; M.M. van Zandvoort, PhD; P.E.C.A. Passier, MD;
G.J.E. Rinkel, MD; J.M.A. Visser-Meily, MD, PhD

Address for correspondence:

M.W.M. Post
Rehabilitation Centre De Hoogstraat
Rembrandtkade 10
3583 TM Utrecht, The Netherlands
Phone: 00 31 30 2561367
Fax: 00 31 30 2511344
E-mail: m.post@dehoogstraat.nl

Cover title
Short version of the Stroke-Specific Quality of Life scale

Keywords
Validation studies; Quality of life; Questionnaires; Cerebrovascular Accidents

Abstract: 225 words

Text including tables, excluding abstract and references: 2457 words.
Tables and figures: 3+1

ABSTRACT

Background and purpose

The Stroke-Specific Quality of Life scale (SS-QoL) is a well-validated measure of Healthrelated Quality of Life in patients with stroke, but, with 49 items, its length is a disadvantage.
Our purpose was to develop and test a short version of the SS-QoL.
Methods
Secondary analyses of 3 different studies. We developed the short version using data from
141 patients with aneurysmal subarachnoid haemorrhage (SAH) and tested it on data from
independent samples of 97 patients with SAH and 105 patients with ischemic stroke or
intracerebral hemorrhage. We selected the item with the highest item-domain correlation from
each of the SS-QoL domains to obtain a 12-item SS-QoL (SS-QoL-12) with a total score and
physical and psychosocial sub-scores. Criterion validity of the SS-QoL-12 scores was tested
in each sample with the original SS-QoL as reference.
Results
All three scores of the SS-QoL-12 showed good internal consistency (Cronbachs alpha 0.780.89). The SS-Qol-12 scores predicted 88-95% of the variance of the original SS-QoL. Mean
differences between the SS-QoL-12 and the SS-QoL and their 95% confidence intervals were
generally within 0.1 point on a 1-5 scale. The limits of agreement were generally within 0.4
point.
Conclusion
The SS-QoL-12 has good criterion validity for all subsets of stroke. Because it consists of
only 12 questions, this short form will be easy to use in research and clinical settings.

INTRODUCTION
Persons who survive a stroke often experience a substantial decrease in their Health-Related
Quality of Life (HRQoL).1 The Stroke Specific Quality of Life scale (SS-QoL)2,3 is a wellknown, standardized, disease-specific measure to assess HRQoL after stroke that has been
validated in patients with different types of stroke.2,4-6 The SS-QoL consists of 49 items in 12
domains and takes about 15 minutes to complete. This length of the SS-QoL is a
disadvantage, as patients with stroke often experience attention and concentration problems7
and the measurement of HRQoL is usually only one part of a larger measurement battery. A
further drawback of the SS-QoL is that previous studies did not confirm its proposed structure
of 12 domains.4,8 This number of domains is less practical for research into correlates of
HRQoL, leaving a choice to use all 12 domain scores as dependent variables, or to use only
the total SS-QoL score with a risk of concealing differences between HRQoL domains. In a
previous study in patients with aneurysmal subarachnoid haemorrhage (SAH) we concluded
that the 12 domains of the SS-QoL could be merged into 2 subtotal scores representing the
dimensions of physical and psychosocial HRQoL.9 Both subtotal scores and the total
score showed very high internal consistency (Cronbachs alpha 0.95 0.97). A 0.73
correlation between the physical and psychosocial subtotal scores however showed that one
subtotal score explained only about half of the variance of the other.9 Using the two SS-QoL
subtotal scores for physical and for psychosocial HRQoL might therefore be a good
compromise between simplicity and a need to provide a profile of different aspects of health.
The very high internal consistency of these physical and psychosocial subtotal scores
suggested that these scores can be accurately reproduced with fewer items, and therefore that
it could be possible to develop a short version of the SS-QoL that reveals one total score and
two subtotal scores that are equivalent to those of the original 49-item version. Such a short

form would be more practical to use in a clinical setting and as an outcome measure in
clinical studies.
The aims of this study were (1) to develop a short-form of the SS-QoL, and (2) to test
this short version in independent samples of patients with ischemic stroke, intracerebral
haemorrhage and SAH.

MATERIALS AND METHODS

Subjects
We used data from 3 previous studies. The largest available sample was used to develop the
short SS-QoL. This sample consisted of all patients who had been treated by clipping or
coiling after SAH between January 2003 and July 2005 in the University Medical Centre
Utrecht (UMC Utrecht). SAH was diagnosed by computed tomography (CT) and aneurysms
by computed tomographic angiography (CTA) or conventional angiography.9,10 Patients living
in a nursing home and patients with severe co-morbidity or insufficient command of the
Dutch language were excluded from the study. All eligible patients received a mailed
questionnaire 2-4 years post-SAH.
One validation sample consisted of another group of patients with SAH, also treated at
the UMCU, who had been discharged home and who had visited the SAH-outpatient clinic of
the UMCU between September 2006 and September 2008. They completed a mailed
questionnaire including the SS-QoL 1 year post-SAH (unpublished data).
The other validation sample consisted of patients with first-ever ischemic stroke or
intracerebral haemorrhage (IS-ICH) admitted to the stroke units of three hospitals in The
Netherlands.11 Inclusion criteria were: age below 85 years, no co-morbidity that might affect
outcome and testable within the first 21 days after stroke. Stroke was diagnosed based on the
presence of both an acute focal deficit and an associated lesion on computed tomography

(CT) or magnetic resonance imaging (MRI) scans. Exclusion criteria were: (1) pre-existing
drug abuse/depression/ADL dependence or cognitive impairment, (2) disturbed consciousness
or inability to comprehend task instructions, (3) recurrent stroke, and (4) co-morbidity that
might affect outcome. These patients completed the SS-QoL 6 to 11 months post-stroke.
The Medical Ethics committee of the UMCU approved all study protocols and all patients
gave written informed consent.

Instruments
The SS-QoL consists of 49 items encompassing 12 domains: self-care, mobility, upper
extremity function, language, vision, work, thinking, family roles, social roles, personality,
mood and energy. Each item is ranked on a 5-point scale, with higher scores indicating better
function. Domain scores are the unweighted averages of the items scores and the total score is
the unweighted average of the domain scores. All summary scores thereby also range from 1
up to 5.3 In an earlier study, we showed that the 12 domain scores can be merged in two
subtotal scores, the first six domains in a physical subtotal score and the last six domains in a
psychosocial subtotal score.9

Development of the short SS-QoL

To ensure that the short form represents the full scope of the original SS-QoL, one item was
selected from each of the 12 domains of the SS-QoL. These domains showed high internal
consistency in earlier studies, indicating conceptual homogeneity within each domain.2,4,9 The
item with the highest item-total correlation, thereby being most representative for the domain
score, was selected. These 12 items were grouped into physical and psychosocial dimensions
according to the merging of the 12 domains of the SSQoL into a physical and a psychosocial
dimension, as described above. The dimension scores and total score of the SS-QoL-12 are

the unweighted averages of the items scores and range from 1 up to 5. A score of, for
example, 3.5 on the short version thereby should reflect the same level of HRQoL as a score
of 3.5 on the original version.

Statistics
SS-QoL-12 subtotal and total scores were computed. Cronbachs alpha was used to assess
internal consistency. Internal consistency requires a Cronbach alpha coefficient of at least
0.70.12 Criterion validity was examined using the 49-item SS-QoL as reference. The
percentages of variance of the SS-QoL scores that could be explained by the 12-item version
scores were computed. Bland-Altman plots were used for visual inspection.13 Agreement
between the 12-item and 49-item versions was examined at group level by computing the
mean difference and its 95% confidence interval, and at individual level by computing the
limits of agreement (+/- 1.96*SDdifference).13 To substantiate these figures, they were expressed
as effect sizes by dividing them by the standard deviation of the corresponding 49-item SSQoL scores. The conventional interpretation of Effect Sizes is: 0.2 is small, 0.5 is medium and
0.8 is large.14

RESULTS
Population characteristics
The development sample consisted of 141 patients with SAH (response 81%). The SAH
validation sample consisted of 97 patients (response 82%). The stroke validation sample
consisted of 105 patients (response 71.7%). Respondent characteristics are displayed in table
1.

Table 1. Characteristics of patients

Demographic data
Gender (% women)
Mean age in years (SD)
Educational level (% at least high school)
Living with partner (%)
Hospital data
Mean time after event in months (SD)
Infarction (%)
Location of aneurysm (%)
ICA
MCA
AcomA/ACA
Vertebrobasilar
Complications after SAH (%)
Re-bleeding
Secondary ischemia
Hydrocephalus
Hydrocephalus and ischemia
Lesion site
Left supratentorial
Right supratentorial
Infratentorial
GOS at discharge (%)
Dependent from others (III)
Disability but independent (IV)
Good outcome (V)
Barthel Index 3 weeks post-stroke (% < 19)
Cognitive impairment 3 weeks post-stroke (%)*
SS-QoL scores (49-item) (mean; SD)
Physical dimension
Psychosocial dimension
Total score

Development
sample
(SAH; N=141)

Validation
sample
(SAH; N=99)

Validation
sample
(IS-ICH;
N=105)

66.7
51.4 (12.3)
31.9
64.9

82.0
52.8
18
62.6

47.6
60.8 (14.3)
43.3

36.1 (7.9)
0

2.1 (1.0)
0

7.5 (1.3)
89.5

23.4
21.3
42.6
12.8

23.4
21.6
42.3
11.7

5.7
16.3
19.9
3.5

4.5
20.7
12.6
2.7
42.5
43.7
13.8

21.2
32.1
46.7

34.7
13.3
52
59.6
41.8

4.42 (0.60)
3.43 (0.96)
4.00 (0.68)

4.53 (0.51)
3.95 (0.92)
4.24 (0.65)

4.29 (0.66)
4.01 (0.84)
4.15 (0.65)

SAH: subarachnoid haemorraghe; IS-ICH: ischaemic stroke or intracerebral haemorrhage; ICA: internal carotid
artery; MCA: middle cerebral artery; AComA: anterior communicating artery; ACA: anterior cerebral artery;
Vertebrobasilar: arteries of the vertebrobasilar system. GOS: Glasgow Outcome Scale;
*Cognitive impairment: patients with disturbances in at least one cognitive domain (z-score < -1.65)11

Development of the SS-QoL-12

In the development sample, the item-domain correlations of the selected items were very high
(0.85-0.95) (table 2). In two domains, there were two items with equal highest item-domain
correlations, and we arbitrarily chose one of these two items. The selected items are also
displayed in table 2.

Table 2. Selection of 12-items out of the 49-item SS-QoL

Domain(1)

Cronbachs
alpha 49item SSQoL

Self-care

.85

Item-total
domain
correlations
49-item SSQoL
.77-.85

Mobility

.92

.81-.89

Upper
extremity
Language

.86

.76-.88

.90

.80-.89

Vision

.80

.84-.87

Work

.92

.91-.93

Thinking

.82

.82-.90

Family
roles
Social
roles
Personalit
y
Mood

.82

.78-.89

.87

.72-.87

.90

.81-.89

.85

.71-.85

Energy

.92

.90-.95

(1)

Did you need help taking a

bath or shower?
Did you have to stop and rest
more than you would like
when walking or using a
wheelchair?
Did you have trouble buttoning
buttons? (3)
Did you have to repeat
yourself so others could
understand you?
Did you have trouble seeing
the television well enough to
enjoy a show?
Did you have trouble doing
daily work around the house?
I had trouble remembering
things.
I felt I was a burden to my
family. (3)
My physical condition
interfered with my social life.
My personality has changed.

Explained
variance
of domain
by chosen
item
73%

79%

78%

80%

75%

87%

81%

80%

75%

79%

I was discouraged about my

future
I was too tired to do what I
wanted to do.

72%

90%

Item selected for SS-QoL-12

Response
set(2)

Physical HRQoL: self-care, mobility, upper extremity function, language, vision, work
Psychosocial HRQoL: thinking, family roles, social roles, personality, mood, energy
8

(2)

(3)

Response set 1: (1) couldnt do it at all; (2) a lot of trouble; (3) some trouble; (4) little
trouble (5) no trouble at all
Response set 2: (1) strongly agree; (2) moderately agree; (3) Neither agree nor
disagree; (4) moderately disagree; (5) strongly disagree
Item arbitrarily chosen from 2 that had equal highest item-rest correlations

Criterion validity of the SS-QoL-12

In all three cohorts, the subtotal and total scores of the SS-QoL-12 showed good internal
consistency and SS-QoL-12 scores explained high percentages of variance of the long version
(table 3).

Table 3. Internal consistency and criterion validity of the SS-QoL-12 in three different
samples

Cronbachs Alpha
Development sample
SAH validation sample
Stroke validation sample
Explained variance (%)
Development sample
SAH validation sample
Stroke validation sample
Mean difference (95% CI)(1)
Development sample
SAH validation sample
Stroke validation sample
Limits of agreement
Development sample
SAH validation sample
Stroke validation sample

Physical
dimension

Psychosocial
dimension

Total
SS-QoL-12

0.83
0.78
0.80

0.85
0.89
0.77

0.89
0.89
0.85

94
94
91

95
90
88

95
93
91

0.01 (-0.01 0.03)

0.02 (0.00 0.05)
-0.01 (-0.05 0.03)

-0.01 (-0.05 0.03)

0.13 (0.08 0.20)
-0.05 (-0.10 0.01)

0.07 (0.04 0.10)

0.08 (0.05 0.12)
-0.03 (-0.07 0.01)

-0.31 0.32
-0.24 0.29
-0.45 0.43

-0.49 0.46
-0.56 0.83
-0.67 0.57

-0.30 0.43
-0.32 0.48
-0.46 0.39

(1)

Difference SS-QoL-49 and SS-QoL-12 (positive figure if mean score SS-QoL-49 < mean
score SS-QoL-12)

The mean differences between scores on the short and long versions were negligible. The
percentages of explained variance were very high in all samples, with the lowest percentage
(91%) in the IS-ICH sample. A sensitivity analysis showed that an SS-QoL-12 version with

the two other items would have resulted in nearly identical Cronbachs alpha and explained
variance figures (maximum 0.01 point or 1% lower). The limit of agreement were also widest
in the IS-ICH sample (-0.46 0.39). The effect sizes of the individual differences between 12item and 49 item total scores in the IS-ICH sample were however very small for most
patients: between 0 and 0.2 for 53.4% of the sample, between 0.2 and 0.5 for 35.2% of the
sample and between 0.5 and 0.8 for the remaining 11.4% of the stroke sample.

All 9 Bland-Altman plots showed a similar relationship between the mean of the 12-item and
49-item scores (X-axis) and the difference between these scores (Y-axis). The plot of the total
scores in the stroke sample is displayed in figure 1.

Figure 1: Bland-Altman plot of the differences between the SS-QoL and the SS-QoL-12
scores related to the mean of the SS-QoL and SS-QoL-12 scores in the IS-ICH sample.

10

Legend: Each circle represents an individual patient. The X-axis represents level of HRQoL,
computed as the mean of the 12-item and 49-item scores and Y-axis represents the difference
between scores on the 49-item and 12-item SS-QoL versions. The horizontal lines represent
the mean difference and the limits of agreement

This plot shows that, in patients with low SSQoL scores, scores on the 12-item version were
slightly lower than scores on the 49-item version. For the 10 stroke patients with the worst
SS-QoL scores (SS-QoL 49 < 3.25), their mean SS-QoL-12 total score was only 0.16 (SD
0.21) points lower than their score on the original SS-QoL (Effect Size = 0.25).

DISCUSSION
We developed a short version of the SS-QoL, the SS-QoL-12, which appears a valid summary
of the original 49-item SS-QoL for patients with ischemic stroke, intracerebral haemorrhage
and SAH. This short form questionnaire differs from the long form by as little as 0.5 points on
a 5 point scale. The major advantage of this short version is that it minimizes administration
time with 37 questions or an estimated 10 minutes. This will make the shorter form easier to
administer, and thereby a more practical tool in research and clinical practice

Our results appear robust as the figures from both validation samples were similar to each
other and to the development sample. A few limitations however apply to this study. First, the
SS-QoL-12 short form was developed in a SAH population. If we had used the sample of
patients with ischemic or hemorrhagic stroke to develop the SS-QoL-12, some different items
would have been selected. However, all item-domain correlations were high, as expected
because this was the way the SS-QoL was developed, and differed only slightly between
items and the results of the stroke validation sample were similar to those of the SAH
validation sample. Second, we used existing SS-QoL data to validate the short version by
selecting the SS-QoL-12 items from the database. In theory, actual answers on the SS-QoL-12

11

may deviate from answers retrieved for these items from the long SS-QoL, as a patients
answers on these questions might be shaped by the other questions as well. Our approach is
however common,15 as it is less feasible to include short and long versions of the same
measure in the same questionnaire, and even then bias by this kind of shaping cannot be
excluded. Finally, since we used the Dutch SS-QoL, replication of this study using other
language versions is recommended.

In conclusion, pending validation in prospective studies in other countries, we feel the SSQoL-12 can replace the original SS-QoL in clinical and research settings if only total or
subtotal scores are required. If the study goal is to report all 12 individual domain scores, the
use of the original SS-QoL is recommended, as these domain scores would be based on only
one item for each domain using the SS-QoL-12.

Ethics
The Medical Ethics committee of the UMCU approved all study protocols and all patients
gave written informed consent.

Declaration of interest
None

Copyright statement
The Corresponding Author has the right to grant on behalf of all authors and does grant on
behalf of all authors, an exclusive licence on a worldwide basis to the BMJ Publishing Group
Ltd and its Licensees to permit this article (if accepted) to be published in the Journal of
Neurology, Neurosurgery & Psychiatry editions and any other BMJPGL products to exploit
all subsidiary rights, as set out in our licence http://jnnp.bmjjournals.com/ifora/licence.pdf

REFERENCES

12

1. Hop JW, Rinkel GJE, Algra A, van Gijn J. Quality of life in patients and partners after
aneurysmal subarachnoid hemorrhage. Stroke 1998;29:798-804.
2. Williams LS, Weinberger M, Harris LE, Clark DO, Biller J. Development of a strokespecific quality of life scale. Stroke 1999;30:1362-1369.
3. Williams LS, Weinberger M, Harris LE, Biller J. Measuring quality of life in a way
that is meaningful to stroke patients. Neurology 1999;53:1839-1843.
4. Ewert T, Stucki G. Validity of the SS-QOL in Germany and in survivors of
hemorrhagic or ischemic stroke. Neurorehabil Neural Repair 2007;21:161-168.
5. Muus I, Williams LS, Ringsberg KC. Validation of the Stroke Specific Quality of Life
scale (SS-QOL): test of reliability and validity of the Danish version (SS-QOL-DK).
Clin Rehabil 2007;21:620-627.
6. Lima RCM, Teixeira-Salmela LF, Magalhes LC, Gomes-Neto M. Psychometric
properties of the Brazilian version of the Stroke Specific Quality of Life Scale :
application of the Rasch model. Rev Bras Fisiote 2008;2:149-156.
7. Htter BO, Kreitschmann-Andermahr I, Mayfrank L, Rohde V, Spetzger U, Gilsbach
JM. Functional outcome after aneurysmal subarachnoid hemorrhage. Acta Neurochir
1999;72:157-174.
8. Hilari K, Byng S, Lamping DL, Smith SC. Stroke and Aphasia Quality of Life Scale39 (SAQOL-39). Evaluation of acceptability, reliability, and validity. Stroke
2003;34:1944-1950.
9. Boosman H, Passier PECA, Visser-Meily JMA, Rinkel GJE, Post MWM. Validation
of the Stroke-Specific Quality of Life Scale (SS-QoL) in patients with aneurysmal
subarachnoid hemorrhage. J Neurol Neurosurg Psychiatry (in press).
10. Visser-Meily JMA, Rhebergen ML, Rinkel GJE, van Zandvoort MJE, Post MWM.
Long-term health related quality of life after aneurysmal subarachnoid hemorrhage;
relationship with psychological symptoms and personality characteristics. Stroke
2009;40:1526-1529.
11. Nys GMS, van Zandvoort MJE, van der Worp HB, de Haan EHF, de Kort PLM,
Jansen BPW, Kappelle LJ. Early cognitive impairment predicts long-term depressive
symptoms and quality of life after stroke. J Neurol Sci 2006;247:149-156.
12. Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J,
Bouter LM, de Vet HCW. Quality criteria were proposed for measurement properties
of health status questionnaires. J Clin Epidemiol. 2007;60 :34-42.

13

13. Bland JM, Altman DG. Statistical methods for assessing agreement between two
methods of clincial measurement. Lancet 1986;8476:307-310.
14. Cohen J. Statistical power analysis for the behavioral sciences (sec ed). Hillsdale NJ:
Lawrence Erlbaum Associates, 1988.
15. Van Straten A. De Haan RJ Limburg M. Schuling J. Bossuyt PM Van den Bos GAM.
A stroke-adapted 30-item version of the sickness impact Profile to assess quality of
life (SA-SIP30) Stroke 1997; 28: 2155-2161.

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